HIV stigma & discrimination

'HIV the disease is the easy bit… It's how other people relate to us being positive, that's the difficult bit.'

Prejudice & stigma

Prejudice means judging somebody without really knowing much about them. Stigma occurs when we 'label' somebody in a way that hurts their standing in the community, (e.g. as immoral, deviant, or less than human). Stigma can have terrible consequences, including dividing or isolating people and contributing to poor health. Stigmatised people often believe that they are somehow 'bad'. For instance, one man we talked to thought that his physical pains were punishment for having HIV until his nurse told him this was not true.

The fear of stigma can also affect people even if they do not actually experience stigma in real life. For instance, in the late 1980s, one gay man told no-one his partner was dying from HIV because 'there was a stigma attached to it,' yet he 'desperately, desperately wanted to tell someone.' He later found that people around him were accepting of HIV when his partner died.

In 2005 gay men seemed to feel less need to be secretive about their HIV status, but many black African people we talked to often said that they still needed to hide their illness from their communities (see 'Secrecy and telling people').

People with HIV faced stigma on a number of fronts because HIV touches on so many social taboos including sexuality, death, sexual practices (e.g. practicing anal sex), gender roles, morality (e.g. whether or not they were a 'good' or 'bad' person), race and mental health. Many thought that HIV is especially stigmatised because it is mainly caught through sex and often thought to affect 'promiscuous' people. Some people remarked that the only way to overcome prejudice and stigma was to be more open about the disease and try to listen to people who have HIV.

A gay male who was diagnosed in 2004 after being sexually assaulted. He had a severe sero-conversion illness requiring hospitalisation, and has been off work since then.

I just think that, if you're not positive in the gay scene, [people think] it's for the pure reason that you haven't been promiscuous, you've sort of pretty much taken care of yourself. And I think that most people, and I think I was probably the same, you sort of tar people with the same brush, that they must be promiscuous or that they're always going to sex clubs and all the rest of it. You don't allow for the fact that people get infected by other means other than, you know, consensual sex. You know, through, I don't know, stick injuries, and drug users and, mother's-baby and whatever, and sexual assault.

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Profile Info

Age at interview:

49

Sex:

Male

Age at diagnosis:

28

Background:

Lives in a city outside of London, diagnosed with HIV in 1985, but has never needed anti-virals, nor had a physical illness due to HIV.

I think people need to listen generally' it is the easiest thing in the world to say and is the hardest thing to do. But I really do feel that breaks down the barriers, breaks down the prejudice, breaks down the discrimination and also starts to make people aware. I think that the general population, that is those uninfected as well, need to learn to listen, and stop judging people' because we judge' we are all judgmental people, we all have prejudices. I have discussed this at great length before but we have got to stop, I am just as judgmental as anybody else. I try to justify the reasons why.

Ignorance

Stigma feeds off ignorance, since people tend to fear what they do not understand. People we talked to from African communities said that there is much misinformation about HIV in their communities. African participants in particular admitted that they had been ignorant about HIV before they were diagnosed e.g. 'I was one of those people, when I used to go to restaurants, I used not to drink from glasses.'

Accurate information can be a powerful antidote to stigma. Gay men in the UK are relatively well informed, although some gay men who were recent immigrations or who were still at school could know less about HIV. However, gay men with HIV still experience (and fear) stigma in the gay and wider communities, and this particularly worries men living outside London.

A 46 year old gay man who lives in a small village in the midlands. He was diagnosed in the early days of the epidemic.

Well I live, I live in a, I live in a small village and with small village mentality. Even though there is a fair few gay people in the village, predominantly lesbians. I've lived there for 20 years it's a' I know all my neighbours they know my sexuality, it's not a problem, they know the work I do. But [sighs] I don't know how some of the less well informed would react if they found out that somebody was HIV in the village. I'm sure I'm not the only one, but I'm not aware of any others that actually live in the village. And although it's now in the commuter belt of [city] and house prices have rocketed, so we've got a lot of new people coming into the village, the true village people are still, as I would say, require enlightenment about HIV. And they'll have the old stereotypes and' and fears... just as in the general population. You know that HIV is a highly infectious disease, you can get it from sharing cups and things, we still have all that sort of crap even though we're 20 years on, and we know that's not the way it transmits.

The number of older people (over 50) who are newly diagnosed with HIV is also increasing which may be because they are also less knowledgeable about HIV and less likely to sexually protect themselves.

In the UK, stigma and fear of HIV have lessened. But some people feared that the recent prosecutions of people for the transmission of HIV in the UK through the Offences Against the Person Act may again stigmatise HIV positive people.

A gay man of British/Irish descent who works full-time and is in a long-term partnership.

But I think it's really' you know the criminalisation of the transmission of HIV, I think you know, it's' Irrespective of the rights and wrongs of the behaviours of people involved, it's a' it makes me feel like a potential criminal, you know, that I'm a criminal, that you know' That, the very act of me engaging in sex and that is potentially, you know the' and I feel like I fully, I accept full responsibility for my own HIV status, that I was a sentient adult you know. You know, whatever else was going on in my life I knew that there were risks involved in my behaviour. Sex inheritantly involves risk, it was recognised in the 19th century when it effectively became' up until now it was impossible to be prosecuted for the transmission of a sexually transmitted infection or HIV when it was recognised that sex could result in pregnancy. Pregnancy could be an unwanted outcome, pregnancy could kill the women or the baby. Sex could result in a sexually transmitted infection. Gonorrhoea and syphilis were less treatable in the 19th century than HIV is now, you know. And it's just this idea that you know, it's just we've now' I think we just live in such a blame culture now, it's never your fault, it's always someone else's fault.

Africans in the UK could be particularly frightened of HIV: 'Africans are very, very scared because back in Africa people are really dying… they don't realise that here in the UK… medication can control it and it's not that easy to pass on.' African participants also reported being socially excluded more than white gay men: 'They (Africans) will avoid people nicely, in a nice way you know.' African participants also worried that rumours would be spread about them. However, some family members who were highly informed about HIV (e.g. health professionals) could be most helpful and supportive.

A 33 year old black African female with a young 5 year old child. She was diagnosed as HIV positive as part of pregnancy screening.

The very first person I told was my sister and I had to tell her because she was working in my hospital then. And she… the midwives that were going to be working with me are people she knew, and they knew me as her sister and all that. So there was no way I could keep it away from her.

So I had to tell her, she was OK with it because she apparently had been working with a lot of women. She had been working with… she knew of a lot of women with HIV coming in, but she was very shocked. She was saying oh because we have a lot of people from Uganda and Zambia, from East Africa, again you know, which is true, it's a higher number from that side you know. And she said not really… she's never come across someone from our country and all that. So she was shocked about my diagnosis.

But she was quite good, she was… And I've never had any problems with going to her home and not… people have had experiences of going to people's homes, and using their cups, and then the cup disappears, yeah. And people have been told not to come out of chairs, when they sit in a chair, they say stay there you know, that kind of thing. But my sister she wasn't, she's not like that, she wasn't like that, and she still isn't like that now. So that was helpful because she wasn't ignorant about it, yeah.

Health care and employment

Although HIV specialist health staff were often highly valued, many of the people we talked to said that other kinds of health workers did not understand the virus, or discriminated against them. There were also concerns that some (not all) employers still discriminate against people with HIV, despite new anti-discrimination laws (the Equality Act).

A 48 year old gay man who lives in a small village in the UK. He was diagnosed in 1986.

I had an endoscopy, was another procedure I had a couple of years ago, and I was the second in line, 10 o'clock was my, was my slot. They got me on the table, anaesthetised me and you could see the doc looking at my notes. You know calling the sister over with his eyes, saying you know are you aware he's positive? And he said to me, 'Mr [name] are you HIV positive?' And I said, 'Very much so. Must have been about what ten, twelve years I've been positive.' And he said, 'We can't treat you', and I said, 'Why not?' 'Well you have to go at the end of the list', and I said, 'Why?' and he couldn't give me an answer. But he uses the stock phrase that all professionals in the medical field use, guidelines. 'Sorry the guidelines.' To which my reply would be, 'What guidelines? Whose guidelines? When were they written? When were they last updated? Where's a copy of them?' to which he couldn't answer. So I went back at the end and the hospital wrote me a nice letter saying that, how sorry they were that because I was immune compromised, they wanted to make sure the machine was suitably clean so I didn't pick up an infection. To which I wrote back and said are you telling me you're putting patients at risk because you don't clean the equipment properly?

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Profile Info

Age at interview:

46

Sex:

Male

Age at diagnosis:

40

Background:

A 46 year old black African who is a highly educated professional with a grown child.

So there's a problem... don't disclose... don't, don't disclose. No it's a diffic, you've got to keep a balance, sometimes you've got to do it, sometimes, you've got to be careful how you handle it you know… Some employer's understand it, they, they are very sympathetic, they understand HIV issues. They understand that HIV positive people are employable... got... the policy... in place.

A number of people... got public and private jobs, in the mainstream jobs, there are quite a number of HIV positive people there. Because some of these employers they've got HIV policies in place. They are being much more aware about HIV, much more... about it. They are not any more ignorant they... or something. So they employ people. And they get more support you know as an employee.

They give more support to... HIV positive people, but not all of them, not all of them, and that's... that's... thing we are complaining about you know… Employers… should educate themselves about HIV issues… and try to have policy in their place of work to be able to employ HIV positive people. They can work. To contribute to society, pay tax.

The good thing... is that the DDA, you know the Disability Discrimination Act which the government has brought in place, that's really helped because HIV positive people have been included in it.

So if the employers throw HIV positive people out it can be taken to court now. About two, two and a half weeks ago, three weeks ago I think, an HIV positive person was sacked from a job, then he took the employers to court and he won his case… After assessing the situation you might find it is good to disclose. Sometimes it makes it easier then…if they have a policy in place.

Homophobia and racism

People also had to deal with other forms of prejudice. For the gay men homophobia (fear and hatred of homosexuals) was more of an issue when they were younger when homosexuality was sometimes considered 'dark and shameful'. The impression is that homophobia is much less 'in your face' as men get older, and London was seen as being more tolerant (and even positive about) homosexuality than areas outside of the city.

Clint was infected with HIV at the age of 17 from a partner at a time when he lacked knowledge about HIV.

They're [young gay men] just ashamed I think, you know there's a lot of' there's still a lot of shame that comes with a HIV diagnosis. And the young people that have come forward, there's only a handful in the whole of the country that are trying to raise awareness, or they won't publicly show their face you know in national magazines or on TV. And that can be, that, I don't know I think that sends out the wrong message. It really does and you know again there are cases of people being criminalised and grievous bodily harm and recklessly possibly infecting someone else. You know and again media attention focusing on that aspect discourages more people to go and get tested in the first place.

Racism is the belief that some races are better than others, with people from some racial groups having more advantages in society than others (e.g. financial and political). Some African participants had experienced racism and the lack of opportunities for Africans in the UK. It was also acknowledged that the role of racism (when it comes to Africans with HIV) is difficult to gauge since there is such diversity within - and differences between - African networks. This can make it hard for African communities themselves to respond to HIV.

Yeah because at the same time the system is very hostile. Yeah, some people when they get tested, will not access services. Yeah they will not access services because they will look at immigration issues, they will look at that.

But you see, at the same time, when you find helpful people, they will try to work around how to normalise your life by even sorting out the issues that you have. You can get hostile responses and you can also get good responses, yes very helpful… Right, yeah it also depends on how you as an individual relate to them yeah…

But also some, some care... I mean some care trusts would be very hostile to such African communities. And while some definitely are very helpful, they don't look at ethnicity, yeah.

And in fact by demography you find that people, you find blacks will be isolated to a certain specific area. Because the systems supports that. Yeah. For instance, if you've go to East London, you find a lot of black people. Because the system supports them. There is no hostile… you know hostility around them, yeah so.

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Profile Info

Age at interview:

45

Sex:

Male

Age at diagnosis:

40

Background:

A highly educated health professional working full time. He is a black African man married with children.

And it… unless people wake up and says look, this is a problem for the African community as a whole… And you find that some people can even go to lengths and say well it's, maybe it's racism. I say that's not racism, it's just you as a community, you've got problems yourselves. Once you work out the problems, you know these things, you know, it can work for you.

So, I mean the community's so diverse in itself… So, so for me in the field it's really frustrating... But it's a shame, I mean for me there is a huge potential for me to explore, but it's just that, to help secure support for, you know to get the right things in the right place. It's, that's what's frustrating.

Fighting back against stigma

History shows that stigma is not inevitable and many people we talked to were very keen to tackle stigma. This was happening in a number of ways:

by people educating themselves and others about HIV, and joining forces with other HIV positive people (e.g. in social groups

people with HIV talking about HIV more openly in their own lives ('I have learnt in my opinion it is better to talk about it because if we don't there is always going to be stigma')

by confronting those who discriminate

by viewing HIV as effectively no different from other chronic conditions

using humour to confront people

the way that others not infected with HIV reach out and show care and support, which made a big difference to people's lives

by participating in this project

finally, by recognising that those who stigmatise are actually the victims of stigma. As one man pointed out, his family (who were not supportive when he was diagnosed HIV positive) were victims of the virus because 'the society in which they lived would not allow them to be compassionate and talk and get the support they needed.'

A 43 year old woman from Africa who describes herself as 'coloured.' She was diagnosed when she went to hospital very ill with TB.

I appeal to people, especially people of mixed heritage. Yes, you, of mixed heritage. You've got chips on shoulders that I understand, because of the different cultures and the conflicts. But come to terms with what is out there. Accept HIV and AIDS for what it is. Accept it. You can't get it from drinking from people's cups, using toilets. It's the' It's sexual. Come to terms with it. Curb the, the' this nonsense that if you promiscuous you, you're smart, you're brave, you're strong, you're with it. No, you're not. You're just a fool. Come out. Get tested. The sooner you get tested, the sooner you can come to terms with it, the sooner you can get the medication. And the sooner you can live. And that's what we're here for. Is to live life to its fullest.

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Profile Info

Age at interview:

41

Sex:

Male

Age at diagnosis:

34

Background:

Irish gay male living in London. He originally went on combination therapies as part of a trial, and has suffered from PCP.

You know, I've sort of been the minority and I'm in London as an Irish man. In Ireland as being a gay protestant. In the Republic, you know, sort of a minority. And then you sort of come here and you become HIV positive. So it's all minorities all the way. So it makes you, it makes me very intolerant to people who don't' who are racist or prejudiced in any way. I have absolutely no time for it. And in sort of situations like that I find that I can't ignore it either. I have to stand up and say, 'This is not right. This is not, you know, you cannot think these views', I mean, 'You can think them but they're not correct.' And I have to express myself and tell them. I can't sort of let somebody say something and sort of think, 'Well, OK, I'm not going to challenge that or whatever.' I have to get in and sort of say, 'Wrong.'